There’s a pretty large handful of primary immunodeficiency disorders, but we’re only going to focus on one: chronic granulomatous disease (CGD).
I know what you’re thinking… What the heck is that?
CGD is caused by a defective gene, and it’s a primary immunodeficiency disorder, meaning the body’s immune system is impaired to the point that it can’t protect the body against infections. A CGD diagnosis typically happens at birth, and it can be inherited—usually from the mother.
Simple, yes? Kind of. However, people with CGD live far from simple lives.
Do you remember being a kid and jumping into leaf piles at the end of Fall when your parents had finally resolved to rake the yard? Wasn’t that THE BEST? Fall was, and still is, my favorite time of year for that reason. You might have pissed off your parents for ruining all their hard work, but they wouldn’t brood on it for too long—they could remember how much fun leaf pile jumping was. They couldn’t blame you. So, at the end of the day, you will have had piles of fun with hardly any consequence.
Now, imagine you have CGD.
If you have CGD and were to jump in a pile of leaves, that fun would soon turn into shocked gasps from your parents, rough handling as they rushed you into the car, and speed-racing down the highway to the hospital where you’d undergo hours of treatment, pills, and needles. And why? Because certain things in the environment, like leaves, could lead to infection, which could very well lead to death.
There is no leaf pile jumping for kids with CGD. There is no walking outside barefoot. There is no laying in the grass. There is no barn hide-and-seek or puddle-hopping. There is no gardening without first putting on a mask. And anything they CAN do, they must first examine for potential risks.
Children with CGD and their caregivers must be trained in vigilance. There is nothing simple about managing a life with CGD.
How ’bout them apples? Sound fun?
Fortunately, treatments today can help alleviate some of that and ensure children with CGD live more normal lives. Still, there will always be an element of caution. So, the next time you’re agonizing over the complexities of life, remember how complex life COULD be.
Here’s to those living with CGD, who’ve treated their lives like one big pile of leaves! You will to find the fun inspires us all!
